Saturday, 18 April 2015

Years have passed since my last post, and for that I can only apologise and hope that I haven't left readers short of further answers to a life with RA being less complicated and painful. In truth, life took over for a while. It seemed I needed more experience of living this life with RA before I could continue to write about it. So much has happened since my last note, both positive and negative experiences. Rheumatoid Arthritis has received mentions in the news and perhaps people have become more aware of the disease. But you can never be fully aware of anything until you experience it yourself, right?
I am now 28 years old, its six years to the month that I was diagnosed with RA. That time now seems so long ago and almost a different life. Most of the time during the early stages of my disease are a blur. A very real blur of emotions and pain and change, but a blur nonetheless.
It would probably be helpful for those of you in those early stages of RA to hear from me that six years on I am miraculously recovered and living the dream, but this sadly isn't the reality. Whilst I have dealt with my pain, grown with it and began life on a different path, a full recovery is not the case and I am sure if you know enough about the disease you understand there is no miracle cure. Living with RA is not necessarily about a cure, just attempts of finding the treatments and tweaks to your lifestyle that help you manage it. I believe that in the six years since my diagnosis I have slowly stumbled across things that have helped me, and made life a little easier. The main thing that I believe truly helps you cope with this dreadful disease is understanding. That means having the understanding from the people around you of what you are dealing with. I don't expect my family and friends to fully understand, and they probably never will. I still find it frustrating, even now, having to explain why I might not be myself one day or why I don't feel so great. Sometimes it takes all my patience and strength to not scream at people 'I am living with a debilitating and painful disease that has not been cured since the last time I saw you!' But then I remember, those people around you don't know what it is like and it's not their fault they don't get it. Perhaps I should explain a bit more when I am having a 'bad day' but that in itself is painful and time consuming and would probably bore them. I bore myself sometimes with the explanations i prepare when someone asks 'How are you?' because in my head the answer is often 'I feel awful, exhausted and low because I haven't slept for days properly, my body is aching, my joints are clicking and grinding when I move, I am struggling to concentrate with the pain killers i have taken...' etc etc.
Communicating how you feel is not an easy task for anyone, but when you have a disease you are battling long term, its even more difficult. I mean, how do you put into words 'arghpghffffjzsbsk' cause that's the only expression that comes to mind sometimes. It's a kind of non feeling that a word hasn't been identified for yet. It's beyond tired, beyond pained, beyond fatigued. And only those who are on this RA journey will understand that.
I can say that at this point in my life, I am very lucky. I have a wonderful support base from my boyfriend who is remarkable at making me feel happy even at the worst of times. He too understands what it is to live with pain due to his own battles with a condition affecting his body and maybe that's what makes this relationship work. We can both appreciate each others 'bad' days, cheer each other up and ultimately understand each other without having to explain. He knows when I am low, knows how to help (through nights where only a hot bath at 3am will ease me to rest or an afternoon nap may interrupt a day out) but it leaves me comforted and happy that I don't have to feel anxious in saying I need some help or a rest. He knows that I would, and have, done the same for him when needed. I am not saying that everyone suffering with RA or a disease should be with someone who suffers the same, but it makes all the difference if your partner is understanding of it and doesn't pressure you to do things you cannot or don't feel up to.
So where am I now? I am in a good place. After trying my hand at running a business for a few years, which I will tell you about some other time, I now am back working in a full time job with an employer that supports my condition (again another great way of coping with my disease is having that support, that people at work know I have limits and are kind to me and understanding of 'bad' days). Being part of the team at work has done wonders for my confidence and I feel like I have a purpose in life. Whilst some times are hard, and yes I do struggle and get tired, waking up and knowing you matter and are needed somewhere is preferable to waking up on benefits with very little to keep you going in life.
I have had both hips replaced, a few years ago so I may have already told you this, but currently I am three weeks away from my next surgery. Yes, ladies and gents, I will have a new shoulder to match the new hips in a short while! Its been a long time coming I think, I have had pain in my right shoulder for a while but it has worsened (and worsened) over time to the point now this is my only option. Everything else has been tried and tested to prevent a replacement (which has risks of course) but I am of the belief, as I was when my hips were replaced, that why hold out till I am older for fear of the unknown whilst I could have a better quality of life now? Now is my time, now I am still young and able to enjoy the things I might not be able to in years to come. I don't want to miss out on any more of life.
With my upcoming surgery and recovery time I am sure I will be with you again soon. Stay happy and keep pushing for understanding from those around you and life will seem a little easier.

All About Me

At the age of 22 I was diagnosed with Rheumatoid Arthritis. I did not know much about the disease but it seemed my life would never be the same again. After months of despair, loosing a loved one and giving up my dream job I am finally coming to terms with my condition. I realised that I am not alone and with the help of incredibly supportive family and friends I can live a normal life and will not be beaten by this. I hope in reading my stories you too those who have been diagnosed will realise you are not alone and those who know someone will get an idea of how their friend/relative may be feeling and the challenges we face. Now 24, I am ready to share my story with you beautiful people (be ready for one hell of a rollercoaster ride!)